A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

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It’s 6:53 a.m. I’m sitting on the commuter train to Manhattan, where I will transfer to a subway to my office. The train, which was scheduled to depart at 6:45 a.m., has not left the station (our community is the train’s origin), because a door is stuck open. Here we sit, waiting.

This morning, the train feels like a metaphor about Martin’s recovery: All ready to go, everything operational, until something unexpected jams the trip.

Martin talks a lot these days, and he has no filter, and it’s getting him into hot water with children and adults alike. Here are the texts I received yesterday from the behaviorist at Martin’s school (edited for length and clarity):

Problem this week was really filtering. I did take Martin out of class today. He was telling some boys on the carpet they were dead. Boys said stop. Teacher told Martin not to say that, it is not funny. He said yes it is and repeated laughing. She then asked him to move his seat and come sit by her (class was on the carpet). He told her no and continued to laugh and repeat.

At that point I stood up and told him to come with me to the hallway. He said please no. I just gestured and he came. I spoke to him sternly outside.

I told him no more trying to be funny. He is saying hurtful things. I typed up the “hurtful things” he said this past week and went over them with him. The speech teacher will do that as well.

[Here she forwarded me a photo of the write-up of “hurtful things” Martin has said. The worst was telling a girl she should not be in the school because of the color of her skin. Martin doesn’t believe that (I hope). He’s been perseverating all month on Martin Luther King, Jr. and his accomplishments. I’m guessing that he interpreted his comment as funny based on the absurdity of past discrimination. Still, hearing that Martin had utter such a remark sent my emotional state tail-spinning.]

The aide who covers specials also made a very good observation. She said some of the boys who play sports together are very friendly and in gym they purposely bump into each other, play footsies, etc. Martin sees this behavior and then of course when he tries to execute it does so in an inappropriate fashion or at an inappropriate time.

So the boys are joking around. Martin observes this and then doesn’t understand why when he does it it’s not right.

Yesterday, at church Kids’ Club, I heard Martin yelling, during kickball or some other game in the gym, “Raise your hand if you’re native!” He meant Native American. The term came up this week, when Martin asked me why Northwest Territories, Nunavut, and Yukon are Canadian territories instead of provinces, and I tried to discuss former European colonies versus territories with more First Nation and Inuit influence. On some level, I know that Martin is genuinely curious about the relationship between native and colonizing populations. On a more immediate level, I am horrified that the expression of his curiosity is demanding to know who among his church peers has native heritage.

I’m at my office now. That commuter train I was sitting on—it got cancelled. The maintenance crew couldn’t fix the door. All passengers, including me, had to gather their belongings and catch the next train, scheduled 34 minutes later. The business call I was planning to take form my office at 8:00 a.m. had to be rescheduled. The later train, of course, was crowded and uncomfortable.

But at least I had a seat; by the second stop, onboarding passengers were standing in the aisles. At least I waited the extra half hour inside a train; passengers at all subsequent stops were standing outside, in the cold, on the platforms.

That talk. The one in which we discuss with Martin how he really is different from other kids.

When Adrian and I met with Martin’s psychologist, she didn’t advocate for revealing Martin’s diagnosis (“ADHD with social-pragmatic language delay”). Instead, the said the better approach might be to talk with Martin in terms of what he’s good at (say, memorizing facts, or learning geography), what he’s pretty good at (say, math), and what still gives him trouble (say, paying attention, or knowing what people mean when they interact). Then we could point out how everyone has a third category: Everyone has trouble here and there.

Adrian and I, strategizing, decided to raise the topic when we went out to dinner Sunday evening. That was my idea. Martin gets nervous when we ask to speak with him at home, because he thinks he’s in trouble. We eat Sunday dinner in a restaurant nearly every week, Martin feels comfortable in that setting, and we make him talk with us anyway, in order to practice manners and to reduce time looking at an iPad or iPhone screen, which is what he’d prefer to be doing. Sunday afternoon, I made paper charts with three columns:

“Things I’m not so good at.”

“Things I’m pretty good at.”

“Things I’m very good at.”

There was a chart for each of us. I thought we could take the focus off Martin by discussing, first, my and Adrian’s weaknesses. After we ordered, I distributed the charts, presenting them as a “fun family activity.” Into column 1, on my chart, I put music, not being anxious, being on time, and paying attention. Into column 2, I put talking to friends, meeting new people, sports, and cooking. Into column 3, I put math, taking written tests, and writing. (Feel free to dispute whether “writing” belonged in my “very good” column.) Adrian admitted that he stinks at soccer, cooking, and being patient, said that he’s pretty good at speaking English (not his native language) and singing, and claimed to be very good at reading and being on time. I struggled to make out most of what Adrian wrote, so I grabbed his chart and added “writing legibly” to the “not so good” column.

Martin went straight for column 3, “very good at”: taekwondo (debatable), skiing (getting there), drums (still figuring out), and spelling (no doubt). In column 2, he included reading (I agree, if we mean straight-up reading, and not reading comprehension) and being patient. Then he stopped, before getting to column 1, “not so good at.” He asked me what he’s not so good at. I replied based directly on something he’d previously told me. “Remember how you told me other kids have better handwriting? So maybe something you’re not that good at is coordination.” “What’s ‘coordination’?” “Coordination is being able to write neatly, or move without bumping into things, and stuff like that. Daddy also doesn’t have much coordination.” “How do you spell ‘coordination’?” “What do you think?” “C-O-O-R-D-I-N-A-T-I-O-N.” (Because, spelling.) He wrote “coordination,” then added “basketball.”

I thanked Adrian and Martin for filling out their charts and began the soliloquy I’d rehearsed, about how everyone has skills that come easy and tasks that make them struggle. I completed less than a sentence before Martin interrupted me to ask, “Is anyone going to see these lists?” I said no, the lists were just for our family to see. Martin flipped his chart face-down and said, “I think we should put these away in case a waiter sees.” I gathered the charts and tucked them into my purse, then resumed speaking. Martin interrupted again, “I think maybe the waiters can hear you.” I promised to speak more quietly. He said, “I don’t want to talk about this.”

Adrian spoke up. “I think maybe Martin would rather have this conversation at home. Is that right, Martin?”

“Yes. At home.”

Strike one.

We got home late (by nine-year-old standards). I did Martin’s supplement routine and got him into bed. Adrian joined, and we restarted the discussion. As soon as I got to the part about everyone having struggles, Martin declared, with finality, “I’m not good at coordination,” then tried to change the subject. I, ever tenacious, suggested other struggles, again from his own prior statements, like his eyes wandering from the page or understanding what peers mean when they speak. Martin said, “I don’t want to talk about this.” I tried to convince him to have the conversation, that discussing strengths and weaknesses helps us understand ourselves. He rolled over and buried his face in a pillow.

It looked like we were headed for strike two, so I threw a Hail Mary. (Apologies for switching sports in my metaphors. I was going to say that I swung blindly, but that’s hardly a way to avoid a strike.) I said, “Do you remember when you said that you’re not a normal kid? Well, no one is a normal kid. There’s no such thing as a normal kid. Every kid has strengths and weaknesses.”

Martin turned his head enough to look at me from the pillow. “No one is normal?” he asked.

“Nope, no one. Even if you can’t see other kids’ weaknesses, they still have them.”

Martin shoved his face back into the pillow, but I could see him nodding in agreement. Good enough. Adrian and I said our goodnights and left.

This is destined to be an ongoing conversation, we decided. We must continue encouraging Martin to discuss his differences and how they affect him. I’m also questioning the wisdom of not revealing his diagnosis. In my head, I’m pursuing a conversation with Martin that opens this way: “Martin, have you ever heard of ADD? It’s a condition that affects a person’s ability to concentrate and pay attention. It’s not the person’s fault. If a person has ADD, her or she can treat the condition and make it better. You have ADD. It’s not your fault. You take all these pills to help make the ADD better.” I’m not sure where that will go, and I have yet to run the idea by Adrian.

The deep, meaningful conversation I hoped to be describing in this post hasn’t happened. So, alas, I need to end this post the same way as the last:

Martin’s new thing is to request “a little chat” before he goes to sleep. “Mommy, can we have our little chat? Then can you send Daddy in for a little chat?” Participating in the little chat requires me to climb into bed and lie next to him as he answers questions about his day, talks about what’s to come, and then requests a nighttime assurance of how much I love him. “Do you see the ceiling fan, how it spins?” I say, or something similar. “Imagine how many times it would spin in a million years. Put that number with every drop of water in the Pacific ocean. You can add in the Atlantic and the Indian oceans, too. Those spiders in the jungle? All the spiders in all the jungles, and all the legs on all the spiders and all the tiny hairs on all the spiders’ legs. Add that all together, and still I love you more.”

The nighttime chat also the time when Martin’s fears and anxieties bubble up—who’s been unkind to him, what he doesn’t want to do. I’m pleased to report that, since we came to Nicaragua, the fears and anxieties have been fewer and farther between.

Since we are living abroad, one topic we discuss frequently, both in our nighttime chats and otherwise, is geography and geopolitical concerns. Martin has memorized the seven nations of Central America by size, both area and population, along with their capitals and order from the Mexican border to the Columbian. He asked if we could make an excursion to Honduras, and I said no because I consider Honduras too dangerous. This got him interested in “dangerous countries.” I tried to explain other nations where I would not travel at this time, and why: South Sudan because of civil war, for example, or Syria because of domestic conflict, Venezuela because of mistaken government policies and newfound resource scarcity, North Korea because of an oppressive regime.

I wasn’t too surprised, therefore, when Martin began one night’s little chat by asking, “Do you know something funny about North Korea?” and then informed me that “a kid at camp” had told him a story about North Korea. I was instantly suspicious. Martin likes to make things up and claim he heard them from someone. Which kid? I asked. A new girl who’s older than he is and whose name he doesn’t know, he replied. Hmmmm. Okay. What was the story?

Martin proceeded to tell me that there was an American boy who tried to take a poster he wasn’t supposed to take in North Korea, and so just because of the poster the North Koreans punched him in the head so hard that he went to sleep for two years, and when he woke up from being asleep for two years, he died and it was very sad.

Martin concluded by asking me whether this North Korean tale really had happened.

I’ve never before witnessed this level of engagement from Martin. It hasn’t been so long since I was overjoyed when Martin became able to tell me whether his sneakers were at school. This North Korea discussion was so far beyond answering basic questions. Martin must have been talking to this girl at camp, listening to what she said, and comprehending the information. He retained the story basics and sought confirmation at home. He initiated the conversation with me.

I didn’t bother correcting any details, like whether we know punches to the head caused Warmbier’s death, or that he was detained 18 months instead of two years. I said, “That terrible story is true. Those things happened to a young American man who was visiting North Korea.”

“What was his name?” Martin asked.

“Otto Warmbier. He was a student at the University of Virginia.”

“When did he die?”

“I can’t remember. It must have been a couple months ago now.”

“I think he died the first week I had camp.”

“You might be right.”

“It’s very sad.”

I could see Martin becoming anxious, so I said, “It is very sad. North Korea is a dangerous place. But do you know what? Nicaragua is not. You are safe here in your bed. Abuela is sleeping in the same room, and who else is in the house? Samara is here, and I am here, and Daddy is here. And who’s outside? Señor Pedro is outside. You are safe.”

Señor Pedro is our house’s cuidador (the caretaker or nighttime guard), who has a room in the garden. Martin loves Señor Pedro.

Once Martin was reassured and asleep, I went on-line to check when Otto Warmbier died. June 19. Martin started camp Monday, July 17, so no. He was off by a month. I don’t know whether the girl at camp told him Warmbier had died the first week of camp, or whether somewhere in the background of his extraordinary memory was a snippet of news he’d heard/seen and mistaken the date.

But I do know this: I am a closer than ever to knowing how it feels to converse typically with my son.

We were hanging out with two other families at a local resort. The adults ate and talked while Martin and their sons played in the swimming pools. The two other boys, Feña and Laszlo, were five and six years old, younger than Martin (and consequently, appropriate playmates).

While the three boys were zipping down a waterslide, swimming out of the pool, and running back to the top, Martin fell behind. His eyes popped above water at the bottom of the slide only to see his friends already exiting the pool. Martin hurried to the stairs, climbed out, and yelled, “Feña! Laszlo! Wait for me!”, then chased after them.

Feña! Laszlo! Wait for me! It was the most natural thing in the world.

But for Martin, of course, it wasn’t. For Martin, the moment represented an extraordinary degree of social engagement. He was playing with other (younger, but typically developing) boys, he wanted to be included, and when he felt excluded, instead of disengaging or growing frustrated, he employed the correct tools to attempt to reengage. I cannot recall ever having seen this total package.

Martin on the beach with his cousin Mandy, who came to Nicaragua for a week’s visit.

My good friend Stacey has been texting me, asking how Nicaragua is affecting Martin. Is he doing better? I don’t always answer right away, because as always the right answer is complicated. As I wrote on this blog, Martin’s anxiety decreased during our first weeks in Nicaragua. Then it rebounded, perhaps in response to some bullying incidents at his day camp. (Spiteful kids, some of them, are everywhere, it turns out. “Spiteful” is the kindest word I use.) Now the anxiety level has fallen again. Martin still thrusts his jaw forward, which I usually take for adrenal stress, but I haven’t seen any clenched fists, and we haven’t endured a meltdown for weeks. His conversation skills have improved. He still repeats himself, and he has trouble following the gist in order to insert himself properly into group discussion. One-on-one, by contrast, he is sensational. I’d go so far as to call him “chatty.”

So I’ve had a sense of improvement. Until this week, however, I did not realize the extent of the improvement. This week Adrian returned to Nicaragua, after more than five weeks’ absence.

“This is a different kid,” Adrian said.

“Elaborate!” I commanded.

“He’s more focused. He’s more adult. And he’s talking less but making pertinent conversation. He seems to be more on point. He’s grown up.”

Then, just last night, unsolicited, I received this message from one of Martin’s camp directors: “I feel like this summer is the start of something great for Martin. The next stage.”

I’m won over. I’m prepared to say that living in Nicaragua this summer has made a difference—even a big difference.

By the way, Feña and Laszlo didn’t wait for Martin. In their little-boy exuberance, they kept running when Martin called to them.

Still, Martin caught up. Eventually.

Have you wondered what Nicaragua looks like? Nicaragua looks like this. How can Martin not be helped

In my law practice, we work with an attorney from Texas who likes to throw “y’all” into sentences, even in email. She writes, “Think y’all need to flesh out that argument,” or, “I’m going to that hearing, and y’all should too.” As a literary device, her “y’all” is most effective as a lead-in or closer, like, “Y’all, we cannot take that case,” or, “Think that one through, y’all.” The concluding “y’all” is grandiose. When this attorney ends a sentence with a comma and “y’all,” I think, Did you get that? Did you pay attention? Because she was talking to you.

Being New York born and raised, I’d sound silly if I tossed y’all around the way my co-counsel does. So when I do choose to conclude a statement, especially a mono-word declaration, with a y’all, let’s agree that it’s extra-grandiose.

Conversation. Conversation, y’all.

Finally, we’ve got conversation. The kind of conversation that involves listening and responding to the partner.

Our family employs a housekeeper who comes weekday mornings, usually arriving just before Martin and I leave to catch his school bus. One day she was surprised to find Martin playing in the family room, and me away from home. (I had an errand to run, and by previous arrangement would be returning to retrieve Martin and drop him at school; Adrian was in his home office, working.) Given that Martin has always shied away from speaking with her—until recently, he buried his head in the sofa pillows whenever the housekeeper addressed him—she was even more surprised to have this conversation with him, subsequently relayed to me:

HK: “Martin! Why are you at home? Don’t you have to go to school today?”

Martin: “I am going. My mom is coming home to take me.”

HK: “If you want, I can drive you over now.”

Martin: “No, it isn’t allowed for anyone different to drop me off.”

Martin and I are spending the coming summer in Nicaragua. (Remember this post? More details later.) One morning, over breakfast, Martin asked, “How many days will we be in Nicaragua?”, and I replied, “Sixty days. All of July and August.”

Eight hours later, in the car, without additional prompting, the following conversation ensued:

Martin: “July and August each have 31 days.”

Me: “That’s true.”

Martin: “But you said we will be in Nicaragua only 60 days?”

Me: “Good point. What is 31 plus 31?”

Martin: “Sixty-two.”

Me: “So we will be gone 62 days.”

Martin: “Mommy, is Nicaragua going to be the longest trip you’ve ever taken?”

Me: “No, once I was in India for several months. I was studying there.”

Martin: “Will Nicaragua be the longest trip I’ve ever taken?”

Me: “Yes.”

These are conversations, y’all. They involve give-and-take. They require response to what the conversation partner has said.

I’m excited, of course. And there’s a caveat, of course. Most of Martin’s conversations still revolve around what fascinates him: right now, bridges, geography, and names. So while he’s made progress thinking dynamically enough to add to a conversation, he still needs to reduce his rigidity and apply that dynamism to a variety of topics.

Most school days, I pack meatballs for Martin’s lunch. Specifically, spicy buffalo meatballs, which I make by combining bison chorizo with minced vegetables. I send spicy buffalo meatballs for four reasons. First, Martin finishes them. I don’t have to worry about lunch coming home half-uneaten. Second, they are easy, insofar as one package bison chorizo, plus vegetables, makes a three-day supply, which I prepare in advance, leaving only the cooking for the morning before school. Third, they keep well and are not a food that becomes soggy or unattractive in the hours before lunch break. Fourth, they fit well within the cycle of Martin’s diet. He eats meat no more than once per day; tucking the meat meal into the school day frees me to prepare a vegan dinner for the whole family.

Last night at dinner—the aforementioned shepherd’s pie—Martin said, “Mommy, would you stop sending meatballs to school all the time? Sometimes I want something different.”

Readers, what a moment! How much do I love that my son has the functional language to express his preferences and advocate for himself? How much do I love that he wants variation? Immediately I recalled a news piece I once about a young adult on the spectrum, living independently, who was anxious to date but impeded by, for example, the fact that he refused to eat anything but canned tuna for dinner.

“What would you like instead of meatballs?” I asked Martin.

“Rice,” he answered. Of course. I limit rice in Martin’s diet, and he schemes for any opportunity to get those little grains into his mouth.

I said, “Your point is well-taken. I’ll see what I can do.”

This morning we were late for the school bus. We were late because I needed some extra time to make Martin’s lunch:

Addendum on the topic of last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. That recipe didn’t work at all, turned out bland, and my last-minute efforts were insufficient to inject any pizzazz. Plus, the recipe made too little potato topping and too much inside filling. I was, however, able to salvage a small victory. I removed the extra filling and processed it into a paste. The next morning, I spiced the vegetable paste, combined it with an egg, and fried the batter into savory pancakes. Martin loved the makeshift breakfast.